Kind Of Confused

[houswoea]

So I had all my tests done and everything was normal-ish, that's fine. But the results for some test weren't back yet so they said they would send me a letter if they were normal.

So the letter on the front says "everything seems within normal limits". But the results of the tests are flagged as abnormal and I can see they are not within normal limits. what the heck.

All in all, it was only the catecholemines in my blood that are abnormal, which I hear is normal for POTS. But what should I do exactly... bring my results to my doctors here? Or... call or something? Or just do nothing?

[Jan]

Usually when I have blood work done, the nurse calls and says everything looks good. One time I asked so many questions, she offered to send me the results. Well, everything wasn't normal, so I looked on line and got scared so I called the doctor's office and they explained how many tests that show not in normal range don't mean anything and why etc.

I would suggest calling your own doctor or bringing the results with you next visit and go over them with someone with medical knowledge.

[houswoea]

Okay, thanks!

I just have no idea who to bring it to... my primary and cardiologist can't help me, but I'm scared of the mayo doctors... somebody new I guess?

It's not like I was terribly surprised my results were ridiculously high, I've seen posters here with even higher numbers... it's just... that it's not normal and I want them to tell me why I should be okay with it. Even though I know there's nothing I can do.

I guess I'm just way too picky. And super self-righteous that the pots guy told me I was not hyper-adrenic and I actually was.

[potsgirl]

I agree with Jan. I always get a copy of my blood test results, and usually there are a couple numbers that are flagged as 'abnormal'. Most of mine are just a little off, and my doctor says they're not off enough to worry about. Your blood results can vary on any given day or time of day.

It worries me that your PCP can't give you feedback on this. They should be familiar with blood testing. Where did you have the blood work done - who ordered it for you? They should be able to give you an answer. Either way, I'd follow up. It'll probably just take a phone call.

Let us know what you find out, and good luck.

[comfortzone]

If the Mayo doctors make you uncomfortable -- talk to their nurse. The nurse of one that ordered the test. If they don't know the answer to your question all they have to do in that system is fire off a short emaail to the doctor for an answer. In my experience answers come within a weeks time usually. Say that you are reviewing all your records for accuracy and find that a couple of things have an asterisk - indicating not within the normal reference range. While you understand that even so -- that it's not to be considered 'worrisome' you would like to have someone to chat with about that very test. That you would feel much more comfortable in being able to learn about POTS and serum catecholamines.

I know that if you have high blood pressure the reference range allows for a higher number set than if you are normotensive.

I also learned that sometimes people as myself will have a very robust surge of norepinephrine upon changing positions from lying down to standing. This can sometimes reflect in some labile up and down blood pressures....or what may seem initially like orthostatic hypertension.

Anyway as you do have POTS and you did go there - yes you have every right to get a thorough explanation -- from the nurse that's on duty for that doctor....or whomever he tells to share with you what you need to know. If the doctor himself calls you -- remember he's just a regular old human being with a day job. A day job to try and help people with health issues. Then just ask your questions with confidence... Hope this works and you get more comfortable with your results and what they mean.

I do this very thing all the time. Pick up on abnormal labs and then find resolution for them. I loved it when the Mayo doc noticed an abnormal lab where I did this kind of thing a year ago.... & here he was writing about it in his dictation. It must not have been 'nothing' -- if he writes about it. It may not be 'harmful' but abnormal is still abnormal. And why bother having a test at all - if you aren't going to utilize the information for your best health in some fashion.

[StacyRN]

I am having an awful time being patient with doctors who say that it doesn't matter if you are hyperadrenergic, or that it's just part of POTS, etc. I have been told all along that it didn't matter, but I pushed for the tests anyway, and found out I was in the 10% of POTS patients with very high norepinephrine levels. Well, being a nurse, I didn't let it go at that. I asked for a 24-hour urine test to check for metanephrines, which is diagnostic for an adrenal tumor called a pheochromocytoma, which is a "rare" tumor that secretes large amounts of norepinephrine. They didn't want to do the test, but I said, Hey, I have to live with POTS for the rest of my life, and if there is even a small chance I have a pheo that could be causing this, and that can be taken out and I would be fine, I want to rule it out!!!!!!!!!!!! So they did it. Guess what? My normetanephrine level came back 3 times the high normal! My doc didn't know what to do with this info, so I got on the web and found the USC website which knew a lot about adrenal tumors, so I faxed them all my lab results, and within an hour I got a call from them saying, "You need an MRI!" So I got my doc to order an abdominal and pelvic MRI, with contrast. GUESS WHAT?? I have a left adrenal tumor! My doc said, enough of this, I'm sending you to an oncologist! I'm having a MIBG scan in 2 weeks, which should be diagnostic for a pheochromocytoma!

They say there are only 500-1,100 cases diagnosed in the U.S. every year, it's that rare. Well, my theory is that many people with hyperadrenergic POTS have pheos and don't know it, because no one will run the tests! I think that in years to come, when it's too late for us, they will make this link. Do you realize that most pheos are diagnosed on AUTOPSY??!! What does that tell you?

My oncologist said he could not believe that no one had worked me up for a pheo before this, as all the symptoms pointed to one... he said they should be ruling out pheos before they just say you have hyperadrenergic POTS and leave it like that... because PHEOS ARE FATAL!!!!!!!!!!!

The docs tell us that POTS isn't dangerous, just annoying... but hyperadrenergic POTS is something else... it is the high norepi levels that cause death early by causing malignant hypertension, and damage to the heart!

I've been diagnosed with POTS for a year now, and it's only because I've researched and asked for things that anything has been done to help me. And I now have a pheochromocytoma, which they say are so rare, they didn't even want to check me for one!

Please, all you hyperadrenergic POTS patients out there... this is serious. You need to ask for the tests, and don't take no for an answer!!!!!!!!

Thanks for listening, I finally found someone to help me... and you need to too!

Stacy

[friday7]

I am having an awful time being patient with doctors who say that it doesn't matter if you are hyperadrenergic, or that it's just part of POTS, etc. I have been told all along that it didn't matter, but I pushed for the tests anyway, and found out I was in the 10% of POTS patients with very high norepinephrine levels. Well, being a nurse, I didn't let it go at that. I asked for a 24-hour urine test to check for metanephrines, which is diagnostic for an adrenal tumor called a pheochromocytoma, which is a "rare" tumor that secretes large amounts of norepinephrine. They didn't want to do the test, but I said, Hey, I have to live with POTS for the rest of my life, and if there is even a small chance I have a pheo that could be causing this, and that can be taken out and I would be fine, I want to rule it out!!!!!!!!!!!! So they did it. Guess what? My normetanephrine level came back 3 times the high normal! My doc didn't know what to do with this info, so I got on the web and found the USC website which knew a lot about adrenal tumors, so I faxed them all my lab results, and within an hour I got a call from them saying, "You need an MRI!" So I got my doc to order an abdominal and pelvic MRI, with contrast. GUESS WHAT?? I have a left adrenal tumor! My doc said, enough of this, I'm sending you to an oncologist! I'm having a MIBG scan in 2 weeks, which should be diagnostic for a pheochromocytoma!

They say there are only 500-1,100 cases diagnosed in the U.S. every year, it's that rare. Well, my theory is that many people with hyperadrenergic POTS have pheos and don't know it, because no one will run the tests! I think that in years to come, when it's too late for us, they will make this link. Do you realize that most pheos are diagnosed on AUTOPSY??!! What does that tell you?

My oncologist said he could not believe that no one had worked me up for a pheo before this, as all the symptoms pointed to one... he said they should be ruling out pheos before they just say you have hyperadrenergic POTS and leave it like that... because PHEOS ARE FATAL!!!!!!!!!!!

The docs tell us that POTS isn't dangerous, just annoying... but hyperadrenergic POTS is something else... it is the high norepi levels that cause death early by causing malignant hypertension, and damage to the heart!

I've been diagnosed with POTS for a year now, and it's only because I've researched and asked for things that anything has been done to help me. And I now have a pheochromocytoma, which they say are so rare, they didn't even want to check me for one!

Please, all you hyperadrenergic POTS patients out there... this is serious. You need to ask for the tests, and don't take no for an answer!!!!!!!!

Thanks for listening, I finally found someone to help me... and you need to too!

Stacy

Wow that is something. Good thing you pushed for the answers.

I don't know much about hyperadrenergic POTS and norepinephrine levels. I'm wondering what tests do you need to find out about hyperadrenergic P.O.T.S.?

I know also that they sometimes ignore slightly high or low levels for certain reasons.

I still always get a copy of my tests and check out the results of my tests just to make sure. If I'm unsure I'll got to the doc and ask for an explanation,until I'm satisfied.

If I'm not satisfied I'll research it more and see the doctor with my concerns..For instance, the GP I had before I was diagnosed said my BP was fine between 100/60 and 90/60. I was feeling dizzy and weak, but it was fine to them cause it was low. I then got a sodium level that was sightly low. That was fine too to them. But this bothered me because I had the symptoms of low BP. Then I looked up low BP and CFS ( which I was told I had) and found this site. I started testing my own BP Lying sitting and standing, and found out how my BP would fluctuate and get lower. Then it made sence . It must have been dropping while I was walking. I actually found myself having to sit down on the floor in the middle of Walmart one day, to keep from passing out, thinking this is not right.

Anyway, the thing is most times it' s not a big thing if they say it's not a big thing. But sometimes it could be something that needs further investigating. I'm glad I investigated mine because it got me to this website,I found a doctor and got a diagnosis.

[sue1234]

When I first got POTS, after scouring the internet trying to figure out what was going on, I found info on pheos. I went to a pheo forum(I don't remember, but maybe pheochromocytoma.org?? it's yellow and black) and really related to their stories. I asked my endocrinologist if we could do 24-hour urines AND asked for a CT scan of my adrenals. My urines were normal, but my CT scan showed a 0.7 cm nodule on one adrenal. Over the last few years it has grown ever-so-slightly and is now 1 cm. I had the serum metanephrine, which they call "the gold standard", but it was normal.

I do have to wonder in my case, I have been taking Xanax 1 mg. at bedtime, and wonder if that has interfered with my results. I have read conflicting evidence in this, so guess I'll have to get off and retest.

Secondly, all pheo patients started off with small tumors. Since it is soooo rare to have a pheo, there are too few people to get feedback from on the pheo board as to how they felt in the years leading up to their diagnosis. All you ever hear is their state at diagnosis.

I totally believe in looking for pheos. I have said that to new people on this board ad nauseam over the last year or so, as I wanted them to not assume it's "just POTS", but to make sure any contributing factors are looked into.

I often wonder if my small nodule is contributing to this in any way. The doctors say it is too small, but I have read stories where people go to have some kind of nodule removed and it was twice the size they thought! So, you never know if imaging is seeing it correctly.

I'm glad you delved into looking further. I would like to ask, when you did your 24-hour, did you feel the adrenaline surges throughout the day? Do you have random pheo-like symptoms, even when you are sitting or lying down? Or, do you just get the adrenaline surges with being upright?

I have told my doctors from day one of my POTS journey that I feel like I am running on too much adrenaline!! Any little ol' thing makes me get that feeling one gets when they are almost in a car wreck!! That is NOT how I used to be prePOTS, so that's why I initially was doing all the pheo investigating.

You know, they have a certain limit that pheo people are diagnosed at, but like I mentioned before about the tumors had started out small, but what about pheo people that spent years with uncomfortable, vague symptoms? Their tumors were starting to spit out adrenaline here and there. Their needs to be a detection system for pheos that they can catch prior to them becoming life-threatening.

Please keep us posted!

[sue1234]

By the way, how big is your tumor?

[StacyRN]

My tumor is small, but they said "significant". In fact, the literature says that very small tumors can make people very very sick. It's 2.1cm by 1.8cm by 1.5cm. The thing is, my urine metanephrines were extremely elevated, and all the research says that if the urine mets come back negative then it is a definite rule out for a pheo.

I do have hyperadrenergic symptoms throughout the day, even lying down... chest pain, hypertensive episodes (even though I normally have low normal bp). Clonidine suppresses the catecholamine effect somewhat, and has helped me alot, but I find that I need to keep increasing my clonidine dose, because it's just not doing the trick anymore... it helps a little, but in an hour or two I need another one!

To check for high norepi levels, they do a blood test, first lying down for about 10 minutes, then after standing up. My norepi levels at Stanford went from 604 pg/ml (supine) which is quite high already... to 1,231 standing. To diagnose hyperadrenergic POTS, the standard is norepi greater than or equal to 600 while standing.

Then, at Vanderbilt, my supine was 311, and standing 1,459. So they said I definitely had the hyperadrenergic POTS. Apparently 90% of POTS patients have the partial dysautonomia (PD) type, where you have mostly LOW bp and fainting. I was in the other 10% that has HIGH bp and near-syncopal episodes but I have never lost consciousness, although some do. My bp is all OVER the place, sometimes 90/60, sometimes 170/115; sometimes very narrow, like 115/98.

After you are diagnosed with the high standing norepi levels by blood test, if you want to check for a pheo, they need to do 24-hr urine OR plasma metanephrines. They check epinephrine, norepinephrine, dopamine, metanephrines, and VMA.

If that is positive, they should do an MRI with contrast, of the abdomen and pelvis, to check for adrenal tumor or "paragangliomas"; pheo's are made of chromaffin tissue, which secretes mostly norepinephrine, and that chromaffin tissue can be not ONLY on the adrenal gland in tumor form, but also scattered all over, anywhere from the neck down to the groin area and are called paragangliomas when they are found somewhere besides on the adrenal gland itself. Only 2% are found in the thorax, and 1% in the neck region, so that is why they do the pelvis and abdomen, as 97% are found there. After they found my tumor, my GP said "You are going to an oncologist, we're not going to mess around with this any more!"

My oncologist feels it is most likely a pheo, so is doing a nuclear med scan called an MIBG, which is specific for pheos, and scans the whole body to make sure there are no paragangliomas contributing to the problem as well. That's as far as I've gotten, we'll see what the MIBG shows, it will be done on Oct. 13,14 and 15th (3 days of scanning). Get the results on the 20th, so will let you all know what they find...

However, they DO say that if the urine or plasma is negative for metanephrines, you do not have a pheo. Xanax would not affect the results, I asked the oncologist because I was on clonazepam at the time and he said that would not affect it. Only things like blood pressure meds or beta blockers might affect it a little, or not at all, but I was off propranolol and clonidine for 3 days before my 24-hr urine test. (And thought I was going to die, my bp went so high!!)

I just want the word spread on this, because docs don't seem to know much about it... they say it's so rare, so they don't bother checking for it, but like I said earlier... most of them are found on autopsy!!! They are fatal, and worth ruling out, and I bet my life they are more common than is known about.

[sue1234]

You need to make a new post with your experiences so people will find it and read it. It is kind of lost in this thread.

See, I have issue with the testing that if one's levels come back not over the upper norm, then you DEFINITELY don't have a pheo. They have to realize that, at some point before diagnosis, ALL pheo people had this tiny tumor growing from just millimeters in size up to the usual 5 cm size. Along that journey, they weren't consistently putting out adrenaline, and then with time, they began to spit out consistent high amounts. They are probably turning away people that have come and go symptoms, that are years away from having full-blown, 5 b/p-med hypertension. Pheos certainly don't pop up overnight and don't start putting out 3x the upper limit of cats overnight.

I really wish they would investigate people who have a smallish adrenal tumor AND symptoms, whether or not the levels are above normal yet.

Can't wait to see if resolving this pheo for you resolves the POTS, too! I am soooo sure it will!

[houswoea]

Thank you Stacy RN, I am definitely on guard about that. Like you, my blood pressure is all over the place and my norep. is high standing and about 300 lying down. Because I don't trust doctors anymore (not that they aren't nice people) I have done a bit of research on them for myself, and I doubt that it would be the case for me, or if it is it would an incredibly bizarre pheo.

For example, people who have pheos often have elevated blood sugar levels. Sometimes not... but a lot. I also read that it may cause high levels of calcium!

I have read that the urine testing is pretty useless if you have a pheo that gives out surges of catecholemines rather than a more regular stream. Because the body gets rid of them very quickly in your urine, unless you're having an attack or episode, urine tests wouldn't come back irregular. They also say the blood test is more accurate, because it's more sensitive to something(?)but if that is fine, you're more likely to not have a pheo than having a normal urine test.

And I read this...

"Dr. Neumann and his team at the University of Freiburg demonstrated that traditional blood and urine testing for pheos found only about 40% of the tumors."

So I guess the best thing to do for the pots people is just wait to see if the meds help, or if things progress and get worse regardless of meds.

But I think it's weird that you fit the POTS mold so well with the supine norep. normal and the standing so much higher. I would have assumed it would always be higher!

I am so happy you found a way to start treating what's really wrong with you. It's a miracle you found it before things were worse. Thanks for stopping by to respond!

[StacyRN]

Not so weird that bp is higher standing than laying down, because pheos are very sensitive to being manipulated, and spew out more stuff when you move around, or they are compressed, etc.

Also, most docs say it's high epinephrine you look for, but NOT true, it's the Norepi that's high with a pheo. Familial type pheos have more trouble with epi, and some do both, but the majority is Norepi.

The blood sugar and calcium could be from a tumor of the adrenal CORTEX, which is the outer layer of the adrenal gland... but the catecholamines come from the adrenal MEDULLA, the inner part. Pheos are adrenal medullary tumors. The adrenal medulla, under normal circumstances, produces norepinephrine, which is converted into epinephrine. The epi goes into the blood stream and is the major "fight or flight" hormone that produces the major sympathetic nervous system response to stress. Norepi mainly stays near where it is produced, isn't the major sympathetic hormone. That's why you can tell there's something very wrong if you have lots of NOREPI in the bloodstream.

Being that they are fatal, in that they cause malignant hypertension and eventual cardiomyopathy and heart failure, I think it's important to rule them out for anyone who has hyperadrenergic POTS symptoms. And you know if you have them... believe me!

[Tachy Phlegming]

1. An abnormal result doesn't mean discussion or treatment if it's not a "favorite topic" of doctors(catecholamine testing and interpretation is not a "favorite topic").

There are certain kinds of lab values and tests which may not used for diagnosis or treatment. These include results obtained from blood pressure monitors, Holter monitors, tilt tables, and, apparently, 24-hour urine tests.

Has anyone (else) on here had abnormal blood pressure, pulse rate, tilt table test results or catecholamine test results ignored?

The instruments and reagents used for these tests might ultimately be phased out due to cost because, really, what's the point? (Reading this forum, I often wonder if tilt tables are used as ping- pong tables or if they're written off as diagnostic devices)

2. People on here should really realize that you can find pheochromocytoma more easily post-mortem. There are a lot of other advantages to doing things post mortem as opposed to when someone is alive.

It is far more economical.

It's easier and less risky to remove these tumor(s)then.

It's exciting. The patient can't talk and the person performing the autopsy has no idea that a patient complained bitterly. It is therefore a total surprise. And rare.

(on the flip side, endocrinologists are less than thrilled about trying to find it. [if you've never heard a subconscious groan from an endocrinologist, it's quite an experience]).

---

At any rate, I hope that helps and that you're happier about why your results weren't discussed!

[StacyRN]

Oh, I LOVE your posting, Tachy! I love your sense of humor!!!

I think the ping pong table remark is great... why don't they just do suping and standing? And have someone there to catch you if you pass out

The post-mortem pheo diagnosis is wonderful... the scary thing is, that IS how lots of doctors think!

And best of all: "If you've never heard a subconscious groan from an endocrinologist, it's quite an experience" lol!! I know EXACTLY what you are talking about!!!!!!

[houswoea]

seriously. who are we to deny the autopsy guy an exciting, once in a life time find? Especially when it saves the doctors the trouble of healing us.

I have a question for you stacyRN that I think might be interesting for people... Did you notice any differences in weight or appetite? and did you try beta blockers? I heard they make things worse for pheos but they will give most pots people beta blockers. Just curious.

Also... are you scared or relieved that they found the tumor? I always thought it might be comforting to know that most of this crap would stop once it was taken out... but how are you feeling about it?

[StacyRN]

I've been on propranolol (beta blocker) for about 10 months. It keeps my hr down, but makes me very tired, so instead of 20 mg they prescribed, I only take 10 mg 3x/day. Clonidine helps me more than anything... if you look it up, it blocks the norepi and epi release, can't remember how at the moment (having lots of brain fog right now...)

I've actually gained weight, even tho I don't eat as much cuz my stomach hurts more, and it feels like all the blood goes to my stomach after eating, especially a bigger meal, or lots of carbs... and then I get lightheaded. But lying around so much and not exercising, as well as not being able to stand up long enough to cook healthy meals so I just eat whatever is easiest (always the least healthy!!) has made me gain about 40 lbs since I got sick a year ago

I am SO RELIEVED about the tumor! I just wish they'd finish all the testing, make sure there are no other norepi-secreting tumors anywhere else in my body (called paragangliomas, which is one reason they're doing a nuclear med scan - MIBG - next week), get them all out, and my HOPE is that I will no longer have POTS symptoms and can get back to work! And life! And exercise! I want ME back...